Risk perceptions and psychosocial outcomes of women with ductal carcinoma in situ: longitudinal results from a cohort study

J Natl Cancer Inst. 2008 Feb 20;100(4):243-51. doi: 10.1093/jnci/djn010. Epub 2008 Feb 12.


Background: Ductal carcinoma in situ (DCIS) has a generally favorable overall prognosis, with a systemic recurrence rate of approximately 1%, a local recurrence rate after mastectomy of 1%, and a local recurrence rate after breast-conserving treatment of less than 10%. Preliminary studies have suggested that women with DCIS may overestimate their risk of disease recurrence. Few data exist regarding psychosocial outcomes for women with DCIS.

Methods: Women in Eastern Massachusetts with newly diagnosed DCIS were asked to participate in a longitudinal study of risk perceptions, psychosocial concerns, and health behaviors. Psychosocial outcomes after DCIS diagnosis and risk perceptions were evaluated at enrollment and at 9 and 18 months. All statistical tests were two-sided.

Results: Four hundred eighty-seven women with DCIS (64% of eligible participants) completed the enrollment survey. Overall quality of life was good among the women surveyed, and the substantial anxiety at enrollment decreased with time (P < .001). At enrollment, 54% perceived at least a moderate risk for DCIS recurrence in the next 5 years, 68% in their lifetime; 39% perceived at least a moderate risk for invasive cancer in the next 5 years, 53% in their lifetime; and 28% perceived at least a moderate likelihood of DCIS spreading to other places in their body. At 18 months after enrollment, perceived risks had not statistically significantly changed from those at enrollment (P = .38). Anxiety at enrollment was the factor that was most consistently and strongly associated with overestimation of future breast cancer-related risks (perceived moderate or greater risk vs less than moderate risk of DCIS recurring within 5 years: odds ratio [OR] = 4.0, 95% confidence interval [CI] = 1.6 to 9.9, P = .003; of invasive breast cancer within 5 years: OR = 4.3, 95% CI = 1.9 to 9.9, P < .001; and of invasive breast cancer during lifetime: OR = 5.3, 95% CI = 2.0 to 14.3, P < .001).

Conclusions: Many women with newly diagnosed DCIS have inaccurate perceptions of the breast cancer risks that they face, and anxiety is particularly associated with these inaccurate perceptions.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Anxiety / epidemiology*
  • Anxiety / etiology*
  • Breast Neoplasms / diagnostic imaging
  • Breast Neoplasms / epidemiology*
  • Breast Neoplasms / psychology
  • Breast Neoplasms / therapy
  • Carcinoma, Intraductal, Noninfiltrating / diagnostic imaging
  • Carcinoma, Intraductal, Noninfiltrating / epidemiology*
  • Carcinoma, Intraductal, Noninfiltrating / psychology
  • Carcinoma, Intraductal, Noninfiltrating / therapy
  • Cohort Studies
  • Depression / epidemiology
  • Depression / etiology
  • Female
  • Humans
  • Logistic Models
  • Longitudinal Studies
  • Mammography*
  • Mass Screening
  • Massachusetts / epidemiology
  • Middle Aged
  • Neoplasm Recurrence, Local / epidemiology*
  • Odds Ratio
  • Predictive Value of Tests
  • Prognosis
  • Quality of Life*
  • Risk Assessment
  • Risk Factors